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Thrown for a Loop (Ileostomy)

By: Melody Zelenz

I didn't choose the bag life—the bag life chose me. Okay, no it didn't, but here I am living it anyway. The day of my surgery, I was thrown for a loop. No, seriously. I woke up, and there it was—this perfect little pink button on my tummy—a perfect little stoma of a loop ileostomy. How did this happen? This wasn't the plan for me. I didn't prepare for this. This was the worst-case scenario, I told myself. But here I am. 


After my surgery, I kept it to myself. I didn't know how to explain it to anyone. I didn't know if I wanted to. Fast forward eight weeks later…and guess what? Here I am. I'm ready to talk about it, and I am so unbelievably happy. 


I came to realize a few things throughout this whole ordeal—how much sh*t I can actually handle (both literally and figuratively), how genuinely and incredibly loved I am (this has been the greatest blessing of all), and ultimately, how much I really didn't know about living life with an ostomy. One thing that became quite apparent was how guilty I was of playing into the ignorance and misunderstanding of this way of life, for years. I didn't know what an ostomy was, not really. Heck, my phone didn't even recognize the word. In my mind, "ostomy" was a term thrown around when discussing end-of-the-road treatments for those suffering from ravaging disease. It was for patients who were "really sick"—not for someone like me. I was hanging in there, I thought, but not really. I was in desperate need of help and healing.


Believe me when I say, it was truly a mess in there, with damage beyond my wildest expectations. In my case, aggressive inflammation as a manifestation of severe Crohn's Disease was responsible for creating a stricture of the terminal ileum, the piece of bowel that intersects the small intestine with the colon. This stricture set the stage for years of obstructions, bacterial infections, malnourishment, internal bleeding, and immeasurable pain and discomfort. Not only that, but the narrowing of the bowel wall gave way to a perforation that was "contained" by a fistula, an abnormal passage between two organs in the body. The fistula connected part of my small bowel to my colon, which was not only dangerous, but made it incredibly difficult and painful to walk. My surgery took place to remove all of these diseased parts, and now my ostomy exists to allow the remaining bowel to safely heal and fulfill its given purpose. In answer to a question I have been asked quite a few times since my surgery—yes, my ileostomy can be reversed when I am healthy enough for a successful resection. 


The truth is, I'm not entirely certain I want it to be. 


In these first two months with an ostomy, I have learned more than I ever could have imagined, and I feel as if I've been reacquainted with a life I'd let go of long ago. For the first time in a long time, I've been able to stand and walk completely upright with no discomfort, my levels of inflammation have decreased to numbers I haven't seen or felt in five years (think 102 to 3.5), I can cook and eat my favorite meals once again with no tears, no blood, and no pain (a true dream for a pasta-lover like me), and guess what? I have energy! Certainly, there are some challenges. Caring for a stoma is like caring for an infant in some ways—baby bag full of supplies and all...but it's been worth it, a thousand times over.


Yesterday marked two months since my life-saving surgery. I thought about taking a photo beside my stoma with a commemorative, Instagram-worthy sticker, but instead I chose to do this. Quite frankly, I never intended to write this post. I never intended to share my experience in such a deeply personal way, but yet again, here I am. The reason I decided to speak out about my life with an ostomy is because it's not something people hear about often, if ever. I've had Crohn's Disease for seven years with considerable engagement within the IBD community, and I still knew next to nothing about it. Understandably, people with ostomies don't always feel comfortable or welcomed in sharing this part of their lives with others. There are a lot of stigmatized misgivings about this procedure and way of existence. This probably goes without saying, but we have some serious work to do.


Perhaps you will read this and you won't care, and that is entirely okay. But you know what? Someday, you might. Maybe you'll come across the topic in a news story, or in a class, or perhaps you'll hear it in casual conversation. When that happens, I hope that it will be more personal to you, because now you know someone whose life was returned to her by an ostomy. I want my story to serve as testament to the notion that this is not the end, but rather, it is an extraordinary new beginning. It's not the worst-case scenario, and it's certainly not the end of the road. It's a beautiful part of me, a beautiful part of many others, and one I will cherish for the rest of my life.

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